Lymphoplasmacytic Lymphoma - Sharing my Lymphoma chemo therapy experience review
Do join us and learn / share your experience with Lymphoma with others here at our Facebook Group
https://www.facebook.com/groups/lymphomaportal
Time line of events and findings
2018 Sep.
Doctor noticed anemia in my annual health and wellness checkup
2019 Dec.
Did a bone marrow biopsy procedure to determine the cause of anemia
View: 2019 - Bone marrow biopsy and aspiration
2020 Jan.
Doctor confirmed that I have Lymphoplasmacytic Lymphoma cancer
View: 2020 - Lymphoplasmacytic Lymphoma detected
2020 to 2022
As I believed that any medication can harm my body, I decided to delay any treatment and monitor for more than two years (which I think it is a mistake on my part)
2022 Feb.
Found Hemoglobin has declined 40% of the minimum level of a normal person, and 5% decline in every 3 months. This could mean that I may have only 12 months left of my life
2022 Feb.
After consultation with my doctor, we agreed to proceed with Bendamustine and Rutimaxb chemo therapy. If it works after six months of treatment, I may enjoy life for another 2 to 10 years. If it fails, I will be in trouble.
At this moment, my symptoms are:
1. Breathless when walking up stairs or brisk walking
2. Three 10-mins power naps daily
3. Night sweat
4. Protein in my urine
5. Occasional slight dizziness (like a black and white TV with a fuzzy reception)
6. Skin blisters appearing on both thumbs and finger tips
2022 Mar.
Preparation for the chemo therapy appointment
Tried to find out from other cancer patients on their experiences and not many real details found.
- What to bring for the first chemo therapy session?
- Should I bring a warm jacket, water bottle and snacks?
- Will I feel nausea and vomit on Day 1?
- Will I be very weak and need someone to bring me home?
- Will I get serious reactions and die?
- How much will it cost me for each session?
- When will I feel the side effects, immediate or a few days later?
- When can I expect to see some recovery or improvement?
2022 Mar. 10
My First chemo therapy session
Arrived at Cancer Centre - 8.30am and was surprised by the strict COVID-19 checks.
After taken my blood pressure and temperature checks, I was led to a ward with eight comfortable reclining chairs.
A nurse came over and started preparing the needle for infusion.
To avoid serious allergy, pain, nauseous and other side effects, I was given pre-medication first.
- Paracetamol
- Sodium Chloride
- Ondanssetron
- Dexamethasone Sodium Phosphate
- Diphenhydramine
I began to feel drowsy after a while from the medication.
10am - Bendamustine was administered and was over in an hour.
During the entire process, I felt very little pain, no vomiting or nauseous and comfortable.
As it was over very quickly, I did not have a need for snacks or warm jacket.
One thing I learnt from the nurse is to drink lots of water and the kidney received the toxins and need to be release quickly. Passing of urine frequently is encouraged. Drink lots of water for the next six months.
I was given additional medication to be taken at home.
Metoclopramide
Dexamethasone
Note: On the 3rd day, I have to self inject myself with a medication at my tummy area, next to my belly button.
Imagine me holding a long needle and stabbing at my tummy !
T + 3 hours - Reached home and had a simple fish porridge, went to sleep.
T + 6 hours - My mouth begin to have a tingling sensation and like a dry throat. In a few days from now, I may developed ulcers in my mouth.
T + 8 hours - I felt strong and healthy (due to the steroids given to me) which will wear off and I will feel lousy again.
Important: Drink lots of water to get rid of toxin waste and avoid damaging internal organs
Day 2 from start date of Chemo Therapy
- 2nd dose of Bendamustine dripped in to my right arm
- By afternoon, my both arms began to feel sore due to the pumping of chemo drug into my veins
- Difficult to sleep at night
Day 3
- Both arms still feels sore
- Getting nauseous in the morning but no vomiting
- Mobility is still good
- Feels like 90% of pre-treatment status
Injection at Tummy area
Required to increase white blood cells and defend against any infection.
Day 4
- Both arms still feels sore
- Getting nauseous in the morning but no vomiting
- Mobility is still good with afternoon sweats
- Feels like 90% of pre-treatment status
- Slight constipation
Day 5
- Drank lots of water during the night to remove toxins
- Morning felt better and mobile with good appetite
- Both arms felt better
- By afternoon, fatigue set in
- Lost 3 KG since 3 weeks ago
- By night, feeling fatigue
Day 6
- Woke up every hour last night due to heavy night sweat
- Felt facial skin getting rough
- Mobility is 90% with slight breathless and good appetite
Day 7
- Avoided heavy night sweats by sleeping without blanket and kept cool
- Felt well in morning but by afternoon, feeling nauseous and dizzy again
- Minor spots appearing on my cheeks and upper neck
Day 8
- Feeling slightly tired in the morning
- Reduced appetite
- Accidentally cut my finger with a knife, took an hour to clot and 3 days to heal
- Stopped taking my nauseous medication to see if there is any negative impact - PASS
Day 9
- Feeling slightly weak
- Walking outside home is tiring and breathless
- Felt arm muscles degrading due to lack of exercise
- Bowel movement about 80% normal
Day 12 (March 21, 2022)
Did a full blood tests to see current status.
- White Blood Cells has dropped to normal level
Day 13
Red patch appeared on my lower body right side.
Could be shingles been re-activated
Day 14
- Red patch still itch (3/10)
- Eating well and mobile
Day 15
- Red patch almost disappeared. Could be due to heat rash or allergy
- Eating well and mobile
Day 16
- Feeling tired and took power naps
Day 17 to 20
- Good appetite
- Did brisk walking 3 KM daily
- Lost 7 KG from Day 1
Day 21
- White Blood Cells count much lower
- Good improvement with Hemoglobin rising to 10.1
Day 22 to 28
- Felt stronger than before
Day 29 - 2nd Chem Therapy with Rituximab first time
- After an hour of Rituximab chemo drug at 50ML per hour, my hand developed an itchy allergy on both my palms
- Doctor administered additional histamine and tried 100ML per hour and was working fine
- Increasing to 150ML per hour caused severed itchy allergy on both palms again
- Treatment stopped
- Have to be admitted to Hospital to continue treatment and monitoring as I have developed complication with Rituximab (allergic reaction)
Day 30 (Friday April 8)
- Rested at bed as Rituximab did not arrive by 5pm and treatment postponed to next day
Day 31(Sat)
- Started Rituximab treatment at 50ML per hour and completed it in 12 hours late at night
Day 32 (Sunday)
- Another day wasted waiting as pharmacy was not open on Sunday - No medication available
Day 33 (Monday April 11)
- Started bendamustine in the morning and completed in 3 hours by noon time
- One of the major difficulty is finding the right vein for the drip
- As my veins are thin and deep, nurses have tried several poking to get to the right vein
- Major bruises appearing on the failed veins
- Finally the nurse used the big vein on my elbow joint
Day 36 & 37
Apr. 14 - Bad news 5 days after taking Rituximab
Redness allergic reaction appearing at both palms with heavy itching at base of palm
Light palpitations
Light fatigue
Slight blocked nose
Body uncomfortable
Going to monitor if it improves the next day.
Day 38 - Decided to admit to NUH Accident and Emergency Ward
- Fast heart beats for last two days, stressing the heart
- Heart beats is 125 per min (normal is 60 to 100)
- Rashes on both my palms and itch
- Doctor gave Histamine to reduce the allergic reaction to Rituximab
- Discharged after 6 hours for home monitoring
Day 39 to 45
- Felt stronger than pre-chemo treatment
- Went jogging and good appetite
Day 46 Blood Test before 3rd Chem Treatment
- Doctor said all signs looks positive and to proceed with 3rd Chemo Treatment
Day 55 - May 5 - 3rd Chemo Treatment
- Doctor decided to lower the infusion rate for Rituximab to 50ML/hour to reduce the allergic reaction
- Took about 6 hours for the treatment
- Followed by another 2 hours for Bendamustine infusion
- No allergic reaction detected
Day 56 and 57
- Felt giddy
- Nauseous
- Both arms in pain due to the chemo therapy drug infusion
- But no allergic reaction
Day 58
- Felt better and getting stronger
Day 59 (5 days after my 3rd Chemo Therapy)
- Allergic Reaction to Chemo drugs appearing on both my palms (itch)
- Lymph nodes on both side of my neck swollen
- Itch and rashes on my arm pits and soles
- Feeling tired and took power naps
Day 82
- Blood Test results improving
- My 4th Chemo Therapy is tomorrow Jun. 2 & 3
Day 83 - My fourth Chemotherapy
- Went smoothly with no allergy reaction
Day 87
- Minor allergy reaction appeared on my both palms and itch
- Resolved by next day
- Similar to my 3rd chemotherapy allergy reaction, but milder
Day 103
- Red welts started to appear on back of my left palm and itch
- Spreading to both legs by Day 108
- Two boils appeared around the red welts
- Bursting them did not help as they both came back
Day 109 - My Full Body Lymphoma CT Scan in nude
Day 109 Full Blood Test result of my chemotherapy
Day 111 - My Fifth Chemotherapy
Aug. 2022:
1. I have completed six cycles of chemotherapy.
2. White Blood Cells and Platelets have improved.
3. Haemoglobin levels stable but below normal range.
4. Doctor will monitor for next three months to view the new baseline.
In summary:
1. Anyone with Lymphoma diagnosed should go for the chemotherapy early.
2. 1st chemotherapy cycle is the worst period as your body may have allergic reactions.
3. By the 6th chemotherapy cycle, the allergic reactions are milder.
4. This is not a cure, but to bring the IgM and Platelets closer to minimum.
5. I felt a slight improvement in my health and energy (before and after the 6 cycles).
Dec. 2022
My Blood Test results: Nine months after chemotherapy started. Still not normal but improving. Strongly advise new lymphoma patient to go for their chemotherapy early while you are physically strong. It is a rough journey but it does help.
Tips before starting your chemotherapy:
In case of a fall and need help, I have installed three loud alarm systems (Bedroom, Toilet, Study Room) where I can simply reach and pull to activate ($5 each).
All household members and incoming guests can easily have their temperature taken contact-less.
$35 a set.